When you are part of a rare disease or chronic illness community, there is comfort in building relationships with others whose lives look like your own, those who understand the terminology and the reality of your daily life. However, those important friendships can lead to unhelpful comparisons or even heartache as friends are lost to the disease. Listen in as Allison and Justin describe the ups and downs they’ve experienced in friendships with fellow caregivers and with those living with chronic and serious illnesses.
As chronic illness caregivers, Justin and Allison are used to experiencing daily challenges, but in the past weeks they’ve both found themselves in unexpected medical situations beyond their norm.
Allison and Justin describe the unique challenges that arise when the person you’re caring for has an invisible illness.
Justin and Allison discuss the ways in which caregiving impacts their physical, emotional, and mental health, what burnout feels like to them, and how supporters can help.
Allison describes the recent battles she has been fighting since learning that Sean's home health supplies are not covered under Medicare. Justin shares the dehumanizing process Sarah went through when applying for disability. Both dig in to what it feels like to fight back against a broken system.
Allison and Justin talk about the difficult reality of being a caregiver for someone with a lifelong chronic illness. They discuss how things felt at the beginning, how they keep going, as well as how people can better support those in these long term caregiving situations.
Special guest, Kyle Woody, Executive Director of Jack’s Caregiver Coalition, and Justin talk about the unique challenges faced by men who are caregivers. Kyle also shares the free resources provided by Jack’s to male and female caregivers alike.
After more than a year of being at home, Allison and Justin talk about the travel opportunities they have taken this summer, both with and without their spouses. They discuss what it’s like to leave their partners and their caregiving responsibilities behind.
Justin and Allison dig into what it feels like to be the physically healthy partner in their relationships, including the grief and struggle they experience when they are able to do things that their spouses cannot.
Allison and Justin talk about their upcoming summer travel plans: Allison with her spouse and Justin without. They cover the challenges and preparation needed for both situations and dig into why they struggle to delegate their caregiving responsibilities.